To ask Her Majesty’s Government what assessment they have made of the plans by NHS Digital to collect primary care medical records; and in particular, the arrangements for (1) patient consent, and (2) the sharing of patient data with third party organisations.
My Lords, data saves lives. We have seen that in the pandemic, and it is one of the lessons of the vaccine rollout. The GP data programme will strengthen this system and save lives. That is why we are taking some time to make sure it is as effective as possible, so the implementation date will now be 1 September. We will use this time to talk to patients, doctors and others to strengthen the plan, to build a trusted research environment and to ensure that the data is accessed securely.
My Lords, I am very grateful for the Minister’s reply, especially hearing that this is all to be put back until 1 September. That is a very good decision, because we have heard that patients have not been able to get their GP to accept the information on the form for them to opt out of the proposed system. The system is not working at the moment, and we are very concerned. There was a thought that the system would be anonymised, but that is not what is proposed. It is pseudo-anonymisation, with NHS Digital having the capacity to identify individuals. There is no capacity for people to unanonymise. It needs a really thorough rethink. I very much congratulate—
I am enormously grateful for the noble Baroness’s endorsement of our decision to delay the rollout. As the absolute epitome of the patient safety cause, she knows more than anyone the importance of data to that cause. I completely endorse the points she made.
My Lords, informed consent is at the heart of good patient care. Can the Minister tell us what plans Her Majesty’s Government have to inform patients that they have the right to opt out of having their personal medical information collected in this way? How will this be advertised?
My Lords, engagement with the Royal Colleges, the BMA and GPs on a one-to-one basis has brought about a system that has a national data opt-out and a tier 1 opt-out with GPs. This is fully explained in all our materials and there has been a campaign to raise awareness among patients. We are taking a brief pause to ensure that patients have almost as much time as they could possibly have to make the decisions they would like to make. That is a wise decision in the circumstances.
My Lords, by coincidence, I received a text from my GP surgery yesterday inviting me to click on a link if I wished to opt out of having my data shared. I do not. Does the Minister agree that data sharing plays a vital role in advancing diagnosis and cures for a range of diseases and illnesses? Of course we need to ensure that there is public trust on anonymity. Can he give us more information on that and on cybersecurity?
I am grateful for the noble Lord’s anecdote. It is no coincidence that he got the text yesterday. We have energetically promoted this opportunity to patients and we are grateful to those who have engaged. He is entirely right. Patient data played a critical role in the development of the shielding list during Covid, in the recovery clinical trials programme and in the vaccine priority list. Clinical data is essential for patient safety. That is why we are modernising the system by which we access it.
My Lords, the choice on the opt-out preference form is either:
“I do not allow my identifiable patient data to be shared outside of the GP practice for purposes except my own care”,
“I do allow my identifiable patient data to be shared outside of the GP practice for purposes beyond my own care.”
The big question is: what is identifiable? For some people with disability, mental health and/or trauma histories, data might be easily identifiable. I knew nothing of this until last week. I await with interest the noble Lord’s reply.
The nature of the data is very explicitly described in the documents that the noble Baroness will have referred to. If she likes, I would be very happy to send her a full set of details. Of course, many patients have engaged with the process and, like the noble Lord, Lord Young, have made the wise decision to remain enrolled in the system.
My Lords, my honourable friend Jon Ashworth called for this delay yesterday in the Commons. It is not often that we can say thank you to the Minister at such short notice, but it is very welcome that the Government have agreed to this delay. The eighth Caldicott principle—I assume that the Minister is aware of the principles—makes it clear that it is important that there are no surprises for the public around how confidential information about them is used. If GP data can be used by a third party, be they public or private, how will that principle be fulfilled?
My Lords, I am grateful to the noble Baroness for her kind remarks. As she knows, there is an incredibly rigorous system for ensuring the safe curation of this data, and I pay tribute to the Caldicott Guardians, the ICO and the IGARD board, which has put in place a very tough and rigorous surveillance system to ensure that all the data sharing that goes on within the NHS complies with the legal requirements and the guidelines laid down by law and by the NHS. These are tough conditions and they are applied very rigorously.
My Lords, it is a relief to hear that there will be a delay, but I am astonished that the Government have left it this late. When will the data protection impact assessment for this be published, and will the Minister place a copy of the DPIA in the House Library, so that Members can read NHS Digital’s own statements about the privacy risks and the impact of the programme? It might help the ICO in its deliberations about whether the system proposed is safe.
My Lords, I am fully behind the sharing of information, for the reasons that the Minister explained. But does he agree that to ensure public confidence, the Government have to do something about the current clunky opt-out approach that they have taken and make it easier, and publish the names of the companies to whom this information will be given and what they are paying for it? The Government must not hide behind commercial confidentiality. We as patients have an absolute right to know this.
My Lords, I agree with the noble Lord that the opt-out system deserves to be looked at. We are undertaking a review of the opt-out system to streamline it along the lines that he described. However, he peddles a slightly false impression. There are extremely detailed considerations in the IGARD minutes, available online—39 pages from the last meeting—which go into great detail on the arrangements for the sharing of each piece of data. On payment for the data, I remind him that—as I am sure he already knows—these are payments for costs and not payments for any kind of charge. All data is shared for very strict reasons to do with research and planning. There are no other reasons for sharing the data.
My Lords, we urgently need better flows of clinical data between different parts of the NHS, but the public are understandably anxious, given the well-publicised data leaks and thefts of recent years, and particularly given that the proposed scheme is not limited to the NHS but includes external third-party commercial enterprises. Why have the Government done so poorly at explaining to the public the need for such information flows and the health benefits that they bring? Why have they not, at least in the first instance, constrained the sharing of data more narrowly, in order to build up the necessary degree of public confidence?
My Lords, I contest the premise of that question. I have not had a single complaint from anyone who has had the vaccine or been on any prioritisation list for the vaccine. Tens of millions of people have had it and they embrace the fact that their clinical data was used to roll out the vaccine. I accept the noble and gallant Lord’s point on explaining. We can do more to explain to the public. We want to engage the professions and the public in a story about how they can use their clinical data more emphatically. On the way in which the data is shared, it is already extremely tightly controlled. I would be glad to go through that with the noble and gallant Lord if that would be helpful.